Living life as a replacement pancreas for myself and my youngest!

Menu

Tag Archives: children

It is crazy to think that over 6 months have gone by since Nora’s T1D diagnosis – some days it feels like we have been her pancreas for years while other days we feel like we are just taking the first steps of this lifelong journey. Here are a few things we have learned along the way and feel compelled to share with the world:

Managing T1D for a child that cannot talk is like trying to hit a moving target while blindfolded. Some days we got it (YES!) and other days we are WAY off.

If she is having a temper tantrum we check her blood sugars. Big swings in blood sugars can lead to BIG feelings.

Just because her blood sugars are low doesn’t mean she is going to sit still or stop playing – find a phone or iPad STAT.

You can NEVER overpack snacks – they will always get eaten. Anyone with young kids can understand this one, now multiply it by 10.

Technology is a blessing, until it’s not. It helps you sleep better some nights and keeps you up other nights. It gives you comfort, but you’ll be on your phone more often then not checking her numbers and texting her care givers.

I’m sitting here waiting for my oil change to be done and thinking about how much life has evolved for me over the last few months. Last year, my days were filled with diapers, snacks, errands, and all the adulting. Now they are filled with all of that plus carb counting, needles, and more technology than I ever expected. Nora’s T1D diagnosis last December lit a fire in my belly – a fire I needed more than ever. Now don’t get me wrong, I would LOVE for her to lead a life without T1D. I would love to lead a life without T1D too! It’s not something either of us had a say in, but we move forward and make the most of our circumstances while trying to have a little fun along the way.

I think this is why I have become more active on social media and sharing our T1D stories. I am having fun educating and helping people understand the literal ups and downs with this chronic disease. I’ve been following others on their journey and I can totally relate to the stories they share. I hope that the stories I post are ones others can relate to or can learn from, but for me sharing our story on social media helps keep me accountable.

If you are a parent you understand that you need to fill your cup before giving to others. I STRUGGLE with this on the daily! Not just with self-care, but, before Nora’s diagnosis, the daily management of my T1D. I would eat when I could, forget to take my lunch time bolus, or just generally be lazy with the day to day management of my T1D. But then Nora was diagnosed and she forced me to be better…be better for her management AND mine. I need to ensure I am taking the best care of myself so that I can continue to help her through her T1D journey.

So thank you social media for helping to keep me accountable and for bringing us a little closer to those who have similar experiences.

I like to think of myself as a “mostly judgement-free” mama. I don’t outwardly judge other moms since it does no one any good, but I do judge other moms inside my head every once in a while. I will continue to work on being a judgement free mama, but I know I have come a long way in the last year. And for the record, we all know there is no such thing as a 100% judgement free mom and if you say you are, you’re lying.

I am also a 100% breastfeeding mom. I took everything in my breastfeeding class to heart and for better or for worse I developed this mentality of “I’m going to hell if I don’t breastfeed my child”. Breastfeeding Little Miss was arguably one of the hardest things I had to do as a mom, but I did it for just over a year. I was not one of those moms that loved breastfeeding – I liked it during the day and learned to tolerate it during the middle of the night. But what got me through it was the phrase “breast is best” and my SUPER-competitive personality – “of course I will breastfeed, its what is best and I have to be the best”.

So naturally, when Little Sister arrived, the plan was to breastfeed her until she was at least one year old. Boy did that plan change! I should have seen the warning signs, but as we all know hindsight is 20/20. In the 2 months that I breastfed her, she would park herself on the boob and fall asleep within 5 minutes. If she didn’t fall asleep within 5 minutes, she would spit up most of what she ate within 10 minutes. She had a terrible latch and there were countless times where she would choke and/or vomit. These were new and big challenges for this breastfeeding mom! So I changed my tactic – I pumped for 20 minutes, 6-7 times a day so that she could take breastmilk from a bottle. As my fellow moms know, pumping is worse than gouging out your own eyes. Even though the bottle had a slower flow, the issues still persisted, albeit less frequently. Fast forward a few weeks, which included 2 ER visits and an overnight stay in the hospital, we learn that Little Sister has reflux and is allergic to eggs, soy, peanuts, and dog dander. If Little Sister came in contact with any of her allergens, she would break out, head to toe, in an itchy, red rash which I learned was actually an eczema flare-up. She would also be more prone to vomiting and/or spitting up most of her meal. So in a family that has no history of food allergies, eczema, or reflux, my baby had all three – and she had them in a bad way. Back to the allergies for a moment and keeping in mind that I was still breastfeeding – can I just say that there is not a whole lot of foods that don’t contain eggs or soy?! Breakfast, my favorite meal of the day, was ruined for the next 10 months. If you know me, you know how I love my omelettes – breakfast, brunch, lunch, and/or dinner. I went through my fridge and pantry and found that over 70% of the “prepared” foods I ate contained eggs, soy, and/or peanuts. I cut those items out for over a week to ensure they didn’t pass through my milk yet her eczema and reflux still flared up which made for a very unhappy baby. So with a heavy heart, I made the decision to give up breastfeeding. For me, knowing that I could potentially contribute to her feeling miserable outweighed the benefits she would receive from breastmilk. Plus having piece of mind that my milk was not a direct cause of her eczema and reflux flare-ups was worth more to me than words can say. In the end, Little Sister got “breast is best” for a little over 2 months and now eats a special amino-acid based formula (if you read between the lines that’s just another name for expensive). While her skin is not always clear and her reflux is not always under control, she is happy more often then not and that is priceless.

Why am I telling you all of this, you ask? 2 reasons – first because you’ll read it (and hopefully not un-follow my blog) and second it’s important to remember that as moms we have to force ourselves to make difficult decisions every day. So instead of judging one another (I can’t believe she is feeding her baby formula when breast is best) we need to support one another through those difficult decisions. You just never know what factors forced a mom to make that particular decision…